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Down’s Syndrome Association campaign to improve information for parents

Posted in Campaigns, Charities, Diagnostic testing, Politics by Matt at WelcometoIllinois on April 16, 2009

June 8-14 is Down’s Syndrome Awareness week in the UK and I just found out that the Down’s Syndrome Association’s campaign this year is a topic that I have written about often: improving the quality of information about Down’s syndrome that is given to parents after they have received a prenatal or postnatal diagnosis of Down’s syndrome.

As the announcement states:

“Research from the Down’s Syndrome Association and the Foundation for People with Learning Disabilities has revealed huge disparities in the quality of information and support for parents when they are given a pre or postnatal diagnosis of Down’s syndrome.

Some have excellent and knowledgeable healthcare professionals. Others are given negative, confusing and unhelpful information.

We think there should be legislation that ensures consistent and accurate information for people who are given a diagnosis of Down’s syndrome or other prenatally and postnatally diagnosed conditions.”

I have previously mentioned that we were luck enough to receive a huge amount of incredibly useful and supportive information about Down’s syndrome, but only after G was born, and while I was very happy to receive it, it did annoy me that the information hadn’t been given to us sooner.

I do not think that the information would have changed our opinion, but I do think it would have made us more comfortable in knowing he support that is available during what it a very difficult and distressing decision-making process.

The DSA notes that the Prenatally and Postnatally Diagnosed Conditions Awareness Act recently became law in the US and has created a petition for to be sent to the UK government for similar legislation to be introduced in the UK.

Needless to say I’ve added my name to the list. If you are a UK citizen and you support the petition’s aims, please do sign up.


DownsEd research fund closes in on £1m

Posted in Attitudes to disability, Charities, Educational research by Matt at WelcometoIllinois on December 12, 2008

Congratulations are due to DownsEd and the Sue Buckley Research Fund which has raised almost £1m of new funds for practical research and dissemination since it was formed a year ago.

The Sue Buckley Research Fund is focused on “improving education for people with Down syndrome by accelerating progress in scientific research and ensuring widespread access to evidence-based advice and information.”

You can read all about the funds successes in 2008 and its plans for 2009 here, while you can read more about Sue and her story here.

Having read both yesterday I feel very humble and grateful that people like Sue and her son Frank and all the DownsEd staff have dedicated their lives to improving those of people with Down’s syndrome.

Here’s a short video about the work DownsEd does.

The use of Ginkgo, Prozac and Focalin as a “treatment” for Down syndrome

Posted in Charities, Learning disability, Scientific research, Therapeutic treatments by Matt at WelcometoIllinois on November 1, 2008

A statement from Down Syndrome Education International (and others):

A combination of drugs recommended for depression and attention deficit and hyperactivity disorder is being widely promoted as a “treatment” for Down syndrome. There is no scientific support for the routine use of this protocol by people who have Down syndrome. It is important that families and healthcare professionals are aware of the lack of evidence for safety and benefits from use of this protocol.

The full details add:

An organization called the Changing Minds Foundation is promoting a “new treatment for Down syndrome” that leads to “life changing” results. The “treatment” includes regular doses of Fluoxetine (Prozac), Dexmethylphenidate (Focalin XR) and Ginkgo biloba, Phosphatidylcholine, ‘Body Bio Balanced Oil’ and folinic acid. Some of these substances are associated with potential harmful side-effects…

There is no scientific evidence to support the use of any of this protocol with people with Down syndrome of any age in order to improve memory or any other aspect of cognition. Nor is there any evidence that this protocol is safe for routine use with people who have Down syndrome…

Scientific research has improved our understanding of Down syndrome considerably over the past 30 years. This has led to the better healthcare and education received by many people with Down syndrome today. Many scientists and organizations continue to work to improve our knowledge and understanding of effective ways to improve quality of life for people who live with Down syndrome.

Although the pace of further progress is often slow and this can be frustrating, only careful research and rigorous controlled trials can provide the evidence necessary to demonstrate that a therapy is useful and safe.

How do Down’s syndrome children learn?

Posted in Charities, Educational research, Learning disability by Matt at WelcometoIllinois on October 26, 2008

A report in ScienceDaily indicates that a study is underway at the University of Denver Morgridge College of Education to compare two early literacy intervention approaches to educating young children with Down syndrome.

The report states:

Researchers are seeking children in the Denver area, ages 2 1/2 to 5, to participate in the study, which will involve a two-day training session to be held at DU followed by an at-home intervention program in which parents will implement the program with their child for approximately 15 minutes per day for approximately 10 months.*

“There has been little to no research on how our children with Down syndrome learn, especially regarding reading and language,” says Michelle Sie Whitten, executive director of the Anna and John J. Sie Foundation and Advisory Committee Chair of The Rocky Mountain Down Syndrome Educational Fund. “There have been significant breakthroughs in terms of how children with other developmental disabilities learn, and I strongly believe that our kids deserve the same attention.”

An international team of experts is contributing to the study, including Sue Buckley from Down Syndrome Education International who has trained the researchers involved.

The report adds:

“What is so exciting and unique about this particular study is that scientifically based research on early learning intervention has been translated into applied research in areas such as autism, but never before in Down syndrome research,” says Karen Riley, assistant professor of Child, Family and School Psychology at DU, and the key investigator driving the pilot study. “In addition, we are attracting researchers for this study who have expertise in other developmental disabilities, and we are applying their knowledge to Down syndrome.”

This study was initiated by The Rocky Mountain Down Syndrome Educational Fund. It is underwritten by a $130,000 gift from The Rocky Mountain Down Syndrome Educational Fund, $10,000 from the McDonnell Foundation and $10,000 from the University of Denver.

Good news for DownsEd on both sides of the pond

Posted in Charities, Educational research, Learning disability, Support services by Matt at WelcometoIllinois on October 20, 2008

Down Syndrome Education Internatational (DownsEd) has made a couple of announcements that happily enable me to keep my 31 for 21 obligations despite being stupidly busy.

First the charitable and research organisation announced plans for the first Down Syndrome Education and Research Center based in the USA. According to the announcement:

“The new center will be a joint venture with the Down Syndrome Foundation of Orange County and will accommodate expansion of the Foundation’s highly successful Learning Program. The center will be based in Orange County, California and is expected to open in early 2009. The new center will offer educational support to families through the Learning Program and will develop evidence-based, educational programs that families across the US will be able use to assist the children’s development.”

DownsEd also announced that it has been awarded a £0.5m grant  from the UK Big Lottery Fund to test an adapted reading and language teaching programme for children who have Down’s syndrome.

According to the announcement, DownsEd will: 

“conduct a multicentre, randomised controlled trial of an adapted reading and language teaching programme and (assuming the intervention is found to be effective) to develop a teachers’ manual and training programme to encourage widespread adoption in schools. Including the dissemination phase, the project will last four years.”

The Genetics of Down’s syndrome

Posted in Charities, Genetics, Scientific research by Matt at WelcometoIllinois on October 19, 2008

Our membership pack from the Down’s Syndrome Association arrived yesterday and is rammed full of interesting and helpful literature, including a booklet on “The Genetics of Down’s Syndrome”.

It is the best explanation of the subject I have read an includes background details on cells, genes and chromosomes and cell division, as well as an explanation of the different types of Down’s syndrome and how they occur.

The genetics of Down’s syndrome is one of those areas that I am confident I understand as I read or hear about it but find it almost impossible to explain in my own words later.

At some stage I will write up my understanding of the genetics on this blog with the hope that it helps me to truly take it in and be able to articulate it properly.

I am far too hungover for that today to be completely honest, so for now I will point out that the booklet it available for purchase from the Down’s Syndrome Association, while an online version is available to read here.

Christmas comes early

Posted in Charities, Politics by Matt at WelcometoIllinois on October 15, 2008

I’ve just seen that Down Syndrome Education International has a series of Christmas cards on sale including designs by young children with Down’s syndrome.

Unlike other charity cards for which a paltry amount actually makes it to the charity, at least 60% of the sales price for these cards goes to Down Syndrome Education International or Down Syndrome Education USA (depending on where you are).

More details on the cards and how to order them can be found here.

It’s also good to see that children with Down’s syndrome have been asked to design a Christmas card for the Chancellor of the Exchequer.

The winning design, chosen by Alistair Darling and his wife and will feature on the official HM Treasury Christmas card. Profits will be donated to DownsEd.

Down’s Syndrome Association hit by credit crunch

Posted in Charities by Matt at WelcometoIllinois on October 4, 2008

Sky News reports the unfortunate news that current economic conditions are having an impact on charitable giving in the UK.

It is a sad fact of life that charities are hit worst when the need it most, and it is particularly unfortunate to see the Down’s Syndrome Association finish its financial year with a £212,000 ($375,000) deficit, spending restrictions and a recruitment freeze.

It may not make much of an impact on that deficit but I have been prompted to do my bit by becoming a member. Although we’ve barely engaged with the DSA I think we’ve probably already got our money’s worth.

Down’s syndrome births up 25% in UK in last 15 years

Posted in Charities, Screening, Statistics, Surveys by Matt at WelcometoIllinois on September 18, 2008

Here are some interesting statistics about Down’s syndrome:

* “Around 750 babies are born with Down syndrome each year in England and Wales – up 25% from around 600 annual births in the early 1990s.

* Around 6,000 babies are born with Down syndrome each year in the North America and around 10,000 across Europe.

* Approximately 220,000 babies are born with Down syndrome worldwide each year. Over 200,000 of these babies are born in less developed regions of the world.

* Over 40,000 people with Down syndrome live in the UK today, around 350,000 in North America and perhaps 400,000 across Europe.

* An estimated 3-4 million people are living with Down syndrome worldwide. As global healthcare improves, the population of people with Down syndrome may double over the next 30 years.”

They have been published by Down Syndrome Education International in conjunction of the findings I noted earlier that indicated that invasive testing for Down’s syndrome carries a much higher risk causing the miscarriage of healthy babies than previously thought.

When you also consider that according to DownsEd, “successful management and treatment of health conditions has raised average life expectancy dramatically for people with Down syndrome from around 12 years in 1950 to around 60 years today” it’s doubly understandable why the charity has called (PDF) on the UK Government to “to consider an urgent review of its approaches to supporting people with Down syndrome and their families and its policies concerning the genetic screening of unborn babies.”

More on that research at the BBC, The Telegraph, ITN and The Observer.

Healthcare for all

Posted in Attitudes to disability, Campaigns, Charities, Learning disability by Matt at WelcometoIllinois on July 29, 2008

Mencap, the UK charity for people with a learning disability, has released the results of an independent inquiry into inequalities experienced by people with learning disabilities and people with mental health problems in receiving healthcare.

The report, titled Healthcare for all, follows the charity’s Death by indifference campaign and has called for change to prevent people with a learning disability dying unnecessarily in NHS care.

As the BBC reports, “The independent inquiry, launched after the deaths of six patients, called for tougher inspections and more training for staff.”

This is just one of the very many things that would never have occurred to me before we found out that our baby has Down’s syndrome. When you read some of the cases cited in Death by indifference it makes you realise how important organisations like Mancap are.

Here’s another small but important Mencap campaign.